I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Working while on Dialysis => Topic started by: girliekick on December 22, 2009, 02:22:51 PM
-
Help me please!
I don't work, or go to school, or volunteer. I want too and have made several attempts to, but Every time I have had to back out bc of surgery, getting sick or just overall fatigue. I am now raising money for a transplant, and there is alot of work involved. My cousin is the chairperson, I believe she is fed up w me, feels I am not committed. I on the other hand feel I am very committed, just not as dependable as I would like to be.
We have been fund raising for about two months, and I have failed her twice. The first time was in the very beginning, we had scheduled a conference call for Her, the treasurer, and the area supervisor from the foundation. I said I was going to call in, but did not bc I was told I was welcomed if I wanted to, but that it was not mandatory. The main reason I didn't was bc I was tired, and had not fully come to terms with the fund raising process. I regret not doing it and would change it if I could. She expected me to call in and I didn't, so I let her down. I really did not see it as a big deal, or I would have done something different. I have tried really hard to commit to only the things I feel physically and mentally capable of doing.
The second Is recently. We are selling cookbooks, and it has turned into a headache. We were trying to make sure a volunteer had received the cookbooks in time to get it to people before Christmas, this involved several phone calls and and waiting. I told her I would get back with her in the morning after I had received the calls back from the people. The morning came, and I had a migraine. I didn't not call her, as I had no information and could not stand the thought of conversing. I took some med for it and told my dad to wake me up in an hour (10:30 or 11). He did not, he is in stage 4 Kidney failure, because he fell asleep in the recliner. I Called her at two, as soon as I awoke, a new shipment had arrived so everything kinda took care of itself. Not that that makes it ok, but it eliminated all the things i was going to do.
Later we talked about it, and she said she needed a commitment from me. I told her I understand, But I cant promise. I also told her to know I would not leave her hanging. I would never have information or anything that would make a difference and choose not to share it. I told her I just couldn't make a promise I didn't know if I could keep.
I have been working hard, and so has she. Alot has fallen on us as we were not as prepared and organized in the first week or so as we should have been, and did not fully understand all of our needs. I have gotten someone to be a coordinator for cookbooks as to alleviate this stress. (prior to the incident)
My mom emailed her after we had our conversation, Here are some of the comments in her reply that hurt me and really have me questioning myself. She is very sweet, and understanding, and really we couldn't have done this with out her. We really need her. I have offered to help her in any way and try to make this as painless as possible. I think maybe she has too much responsibility and needs help. Which I am working on some solutions to the problem.
I know that the rest of the family accepts some things that I will not, I do this out of love & nothing else.
But if she can't keep that commitment, then I will step down or co-chair & still volunteer.
if she is so sick that she cannot even text or call me & tell me she is sick & cancel... what we have planned, then, that just won't work for me.
I did promise I would try harder, and I have been thinking maybe I need to be more explicit about my struggles ie headache vs migraine.
Am I being Silly?
Am I being Lazy?
Is this a normal problem?
I am so conflicted, bc there is a part of me that really feels She should step down bc i fear she doesn't understand, and part of me that knows we need her to help make the fund raising work. I don't look sick, and I feel like people think if I am not in the hospital or hooked up to a machine then I must be fine. (or the over protective ones who feel I am about to crumble, but that is another post)
Then I think, What is the family putting up with? What does that mean? I have horrible sleep patterns, and often need a minimum of 10 hr a night/day.
I don't know what to do, I do not want to make the situation worse, I don't want to hurt anyones feelings. I just don't know.
Am I in the wrong? I really need help sorting this stuff out.
Thanks in advance for the replies
Girl
-
You are not lazy or silly. I remember my daughter just plain being tired and having bad headaches. I would never expect her to be involved in such a thing. Does your family etc. REALLY understand what you are going through?
There is groups that help raise money for transplants. I will do some research on the internet cause I at one time looking into this area for Sarah. Don't have the information anymore.
-
pam
We are involved w NFT www.transplants.org They are very helpful, but everything is so professional, and that adds to the work load. thank you
girl
-
umm...
call me a stupid old git but....
WTF???
You guys are raising $$$ for a transplant for you. Why do you need the transplant? Not because you're sitting on your butt looking cute that's for sure!!!
I think it is ABSOLUTELY reasonable for them to understand that while you are totally comitted to the cause (heck, it is YOUR cause!) but you can't guarantee everything because.. umm.. you're sick.. and part of this terrible disease you have to put up with is being tired, migraines, falling asleep at the drop of a hat, and just not being up to it at one time or another.
I think though that there are simple things you could do to make your life easier in terms of keeping those appointments. For example you said in your msg that you asked your dad to wake you up. Why not set your cell phone to alarm when you want to be woken up? That takes the responsibility off anyone else(who may be asleep, or forget, or whatever) and back onto you (or your phone!). If you have no info to pass on and don't feel up to talking would it be reasonable to send a text message saying "Sorry no info on books. feeling dead tired" or something?
Reading between the lines I think maybe the issue here may be communication as much as understanding. I don't think you're being lazy or silly but perhaps there are simple ways that you can stay involved even when you're not feeling the best by using things like phone alarms and text messages to communicate where you're at. Additionally I think maybe a reminder needs to happen to those involved that you're not slacking off on purpose or by choice.. but these are symptoms of your disease that you have to deal with on a constant basis.. and the point of the transplant is to help with all that!
I hope you can sort something out that works for everyone
-
Thanks you guys-
Richard you are absolutely correct.
We are both going to focus our efforts on finding people to alleviate some of our responsibilities.
I hope that provides resolve for us. I reminded her and (myself) this is still volunteer work and it should be treated as so. Ill keep you updated to anymore roadblocks I encounter in this endeavor.
My feelings were just greatly hurt. I want to be able to any thing and everything. A
Adjustment is a pain.
Girl